Another Nightmare

So last Sunday I wrote: "On the positive, I won't have to run anywhere at the drop of a hat this year, I can rest and recover at home and hopefully pull out of this extended crash/relapse."  So much for being positive/optimistic and thinking I would have some time to rest and recover.


On Monday my dad was here (he stops by most days) and said he needed to flip his sheets around because of all the little blood marks.  I reminded him AGAIN that he has two sets of sheets and could take the dirty ones off and put them in the laundry and put the clean set on.  He said, "Oh no, I will just flip the bloody section from the head to the feet."


So despite feeling so horrible I had thoughts of wanting to die running through my head, I dragged myself over to his place to change his sheets.  Then I noticed bugs on his bed and the skirt of his bed (I won't go into gory details but three phases of bugs including larvae).  It turns out there was a bed bug infestation in his bed/suite and he's been a feeding ground for them for months!!


Next, I reported said infestation to the staff and was told immediately much of the issue is the renter's responsibility.  I was too weak to even lift a bag and was told "then find some help".  Being mostly home-bound I have few friends, and my roommate/best friend was away.  My 86 year old dad had to haul garbage bags full of clothes (everything fabric in the suite except the bed and coverings which were disposed) out to the car.  He got help from an elderly man with a walker!!!  Talk about feeling pathetic on my part.


I came home and just cried my little heart out because I was so horribly sick/crashed and overwhelmed. I messaged one of my dog training friends (more of an acquaintance) and we called in a few other people from the dog group and they came and picked up me, and 6 garbage bags full of stuff. We went to the laundromat and laundered it all in hot water and a super hot dryer and they even folded it all. Now bags of his decontaminated stuff are piled in corners of my house.

My dad also had to move into my house while they fumigate his bedroom.  They told me for a few days, then for a week, now they are saying 2 or more weeks. So I can't live in my room until they finish the fumigation process.  I live in a 720 square foot house (there is semi finished basement where my housemate lives, we share the kitchen). The bed in the tiny spare room is too high up for my dad to get into, so that is where i am camped for now, it's not a bad room really, it's just not my bedroom. He is here most the day, but still going over to the dining room at his place to eat most his meals, because cooking him 3 meals a day is beyond me (and anyways, he's still paying rent).

It is all very frustrating and disheartening. His place seemed so clean and nice and safe.  I'm frustrated no-one else caught this issue earlier.  I'm also VERY frustrated that they are insinuating he must have brought them with him in his bed.  He's had that bed for years and there was no issue until he moved into this suite at this residence.  They have admitted it's not the first case of them this year at the residence, not to mention other residences and hotels in this city have been in the news regarding bedbugs the last year or two.

My day to day life is now a lot more challenging.  I have trouble coping with him constantly as he follows me around this small space and is very needy, and it's not like I go to work and can escape. I'm home almost all the time resting and doing my own thing.  I will survive, but life just really sucks right now.  It's bringing back all the traumatic incidents of last year, when I was thrown into being the main caregiver to two parents while ill myself. I thought that was mostly in the past, and that I was down to a do-able level of care.  Wishful thinking.

Crashed

Well it finally happened, a sustained crash.  For most of the summer I've been going along with a crash day or two here or there, thinking "I really only have a mild case of M.E." (mild is often still disabled fyi). Then I did a dog event last weekend. Monday arrived and I didn't feel too horrible, but by the end of the day, the carpet slipped out from under me, I was just so so weak and fluey.  Unfortunately, I haven't had a good day since (seven days running now).

I keep waking up each day wondering if I will feel any better/stronger, so far, not so good.  I am not completely bed-bound, but can't sit up for very long (unless my feet are up) or stand for more than a minute or two.  I am just completely wiped out. I've had a lot of days where I can barely lift my arms. It hurts to breathe. I've had a headache (I am not a headache person) for two weeks running now.  Not really much else to say about being crashed, if you have M.E., you already know.

Finishing up this online course has been really challenging, especially doing it while fighting the equivalent of Mono, but I'm nearly there, which means I can hopefully just shut my brain off and rest for a couple weeks.

It's amazing to me when I'm having better days how quickly I put this horrid existence out of my mind. I tell myself "it really isn't that bad"...then I have a week like this! It really is this bad.

Last summer at this time, I got an emergency phone call and headed down south to help out my folks when my mom initially went into the hospital.  On the positive, I won't have to run anywhere at the drop of a hat this year, I can rest and recover at home and hopefully pull out of this extended crash/relapse. On the negative, my mom is no longer around to go help, which is really sad. If I had to do it again, I certainly would. What a heart-wrenching traumatic year it's been.

Here are some photos from my front garden which is full of (mostly) native plants.  It can look sparse at times and unruly, but late August is a good time of year for these gardens.

Swamped

I am hanging in there, still sick (of course) but not relapsed.  Decent okay days and horrible days, but luckily just crash days.  We celebrated my dad's birthday last week, and I still help him manage life on a daily basis.  He is hanging in there too.  I'm happy he's nearby, but sometimes being his main companion takes a lot out of me.

I came across this article not long after my mom died.  I saw it again today and started crying...it's a really good to read if you've lost your mom (or a close loved one): https://www.theguardian.com/commentisfree/2016/mar/03/we-dont-lose-our-mothers-reality-more-violent-that-that?CMP=fb_gu

My course finished yesterday and I have a week to mark all the assignments and get my grades in, it will be a challenge.  I'm so glad this is almost over, I took on way too much with a six week condensed course, even an online one.  I am not well enough to manage it.  I'm sure I don't need to justify this fact to this crowd (thankfully). Right now things are "spinny" and "off" just looking at this screen, my brain is past processing today. Not that there haven't been good parts, there have been! It's just doing something this intense is too much given my health.

The past week I've been mostly living on the couch watching a lot of Olympics.  I invented a word for the hours I'm spending in this semi-vegetative state.  I call it Olympitose, get it? :)

Life Can be Hard

There are debates about happiness.  Some scientists will tell you that a good part of it is genetic, or biological.  Are some of us just programmed to be more happy, to take a rosier view of things?  There are so many ways to look at it.  I read one study recently that looked at a connection between money and happiness.  This study found that wealthy people after a certain number (it was under $100 000) aren't any more happy than those with less money, however, there was a cut off. So those who live in poverty did have less happiness (this is no big surprise, when I was struggling this year to pay my bills, it did add a layer of stress to everything else).

So why am I writing about happiness? Because I'm wondering why I'm sad so much of the time lately.  Why does life feel so hard/difficult and empty? Why, out of all my whole family, am I the only one who seems to be mourning my mom?  Why does this loss have me crying from time to time still 6 months later, why is there a huge hole that I can't seem to fill? It's not like we had the perfect relationship or that we were together a lot (we weren't).  It was two or three visits a year and a phone call a week.

Sometimes, even on my "good days" health wise I struggle to feel happy.  Instead, I feel so alone.  Alone in an empty house I'm mostly too sick to leave, alone with my grief, unattached and unloved by any partner, alone taking care of my dad (not completely true because they help him out at his place, but family-wise very true). And despite the fact I'm working, and that is good, work-wise I feel "alone" because there is no community to bounce things off...no office with a person next door to chat with.  The only reason I'm able to do this job is because I don't have to go to an office, on the other hand, there is a feeling of isolation.

My mom's passing this year, brought into focus the temporary nature of human existence for me.  I feel like this should mean every moment I have is precious and important.  Instead, often I feel like the moments drag, I ponder whether anything matters really.

So basically, I'm having a bit of a "down".  It's not all the time, but it is nice to have a place to write about it.  Do you ever share any of these same thoughts or feelings?

Working Woman

Sorry I have been so inattentive to this blog.  While I've been working since April preparing my course (and the "work" I did on my PhD was also work), I am now officially an instructor and a part-time "working woman", and it is taking a lot out of me.

It is incredibly time consuming, sucking all my energy.  I am having symptoms of brain fog which I haven't had in almost 10 years so I know I am near/over my limit. On the other hand, it is about the most perfect job I could find given my abilities and circumstances (flexible schedule online from bed), so I hope I can manage the next 5 weeks.

It is clear to me just after almost two weeks into the course, that I will never work close to full time again in my life time.  No amount of will power can overcome all the symptoms and limitations of this GD illness.  After 14 years, it's pretty obvious that nothing's going to change much, none of these illness related problems are going to magically disappear.  And as my friend with M.E. said, the only hope for us really is "some miracle cure".  Realistically it would take a miracle. This likely means that on some level, I may have to be on "disability" indefinitely to survive.  This makes me super sad.

On another topic, due to blackouts (which I'm sure are just POTS) and some weird visual symptoms, I agreed to a brain/head MRI.  I've never had one, so I guess I might as well, however, I only agreed to it on the condition that I didn't have to see a neurologist.  The last thing I need in my life is to wait a year to see another dismissive or arrogant specialist (this is my experience with 4 of 5 I've seen).

I've been enjoying summer a lot despite the much worsened POTS.  Sitting outside, tinkering in my gardens, being warm.

An interesting crash trigger

So on fathers day I took my dad for a one hour sailing tour of the harbour.  While we were out he was clearly nervous as it was in an actual sailing boat (a pretty large one).  I thought he'd have the time of his life as one of his main hobbies since he moved here is going to a nearby overlook and watching the ships come and go.  While nervous during the tour, in retrospect I think he did enjoy his gift.  As for me, I absolutely loved it!!!  It felt so cool and adventurous to do something like that rather than the usual laying in bed and/or housebound.  To be out on the water on a beautiful day was such a treat.  I did get a little dizzy from the motion and some mild sensory overload, but less so than in a store with fluorescent lights. We got up close to a "salty" - an ocean going freighter - and we saw pelicans and cormorants etc.

However, the next day I was not only crashed but burnt! I wore sunscreen but didn't think to do my knees and I was wearing shorts.  I had 5 horrible days in bed til I was back to my normal level of crap.

Then this week I had a friend visit, but I was very very careful activity wise not to over-do.  I did sit out on the patio quite a bit in my recliner, and one day as I was resting there I got burnt.  Then yesterday I was so crashed, I really felt as if I was dying (and I still feel horrible today).  My roommate pointed out both crashes weren't the 2 day effect of activity that I can usually count on (if I do too much I crash 36-48 hours later), but rather perhaps as a result of getting too much sun?!! Okay, how can getting too much sun cause an immune reaction?  It makes no sense...but it fit.  So I posted something on my M.E. group and sure enough, many others have had a relapse/crash from sun exposure.  An immune/disease reaction from sun? From enjoying the sun!!!

And to add to the injustice of it all, I've been resting up all week so I could attend a dog event I've been looking forward to for 6 months!!!! But I am absolutely too ill to do anything, and by no means well enough to leave the house.  The event runs three days, I'm hoping they will let me shift my registration from Friday to Saturday or Sunday on the off chance I pull out of the relapse/crash in time.

I was so sick yesterday I was just crying with the overwhelming flu and weakness stuff.  I made the mistake of wasting my energy to go see my Nurse Practitioner (I had a ride).  There is nothing she can do for the M.E which just makes me so so so mad sometimes.  Not at her, but at the fact that WTF!!! How can those of us with this disease be so ill with just no one or nothing that can help in anyway?

She did give me a prescription for a PPI again as I've been throwing up a lot, not tolerating most foods.  It's a combo of GERD and POTS and just M.E. I think.  She also thinks my stomach ulcers are likely back. I also managed to faint in the garden for the first time in 10 months bending over to pick a weed.  She said we could get me a new cardiologist (mine retired) but the one I had tried me on most the drugs for POTS and while nice and not dismissive, he really didn't help me much.

So that's my life at present...pretty horrible, and at the moment I feel as if I'm about to puke which lately has been 12 out of the 14 hours that I'm awake.  It could be worse, I'm not nauseous, just constantly feel like my food will not stay down (and it doesn't a lot of the time).

As for the issue of a better understanding of M.E. in the general public, a friend (non M.E.) posted an article today and I really like most things about it. For one, while they talk about the study's findings they don't say it's the disease cause as in the case of many of these articles, they speculate it could just as well be the result of the disease process.  They also discuss other scientific findings that may be part of the puzzle.  They also don't say in the title "M.E. no longer seen as psychological" as most media related articles seem to feel the need to do despite over 4000 studies showing abnormalities and 25 years of research.  If you need to feel hopeful about recent science, this is a good article to read: http://www.sciencealert.com/researchers-find-chronic-fatigue-syndrome-markers-in-gut-bacteria